Thursday, September 10, 2009

To Be Continued...

That's sort of how it felt, getting THE phone call from the Cleveland Clinic this afternoon. I'm not entirely sure how to feel right at this very moment. Part of me wants to be mad. Part of me wants to be cool. I'm just not entirely sure I am thrilled with the way things just went down. And I don't mean how it pertains to Bennett's Oligoastrocytoma. I mean just how the whole thing played out today.

So last Friday I got the call that they would review on Tuesday and let us know what the results were. No call came in on Tuesday. OK, got it. People are busy. By afternoon Wednesday, we called them. Nobody called back on Wednesday at all.

So today comes, we call again. We speak to the receptionist-type person again, not sure what her title is and I am not naming names, but she sounds like a nice enough person. Says she'll relay the message again and someone will get back to us.

Ultimately, as it turns out, the NP who I spoke with Friday was out today, so the receptionist-type person contacted someone out there and called us back. But the info was very vague. Here is a best-of-my-ability recap

Receptionist-type Person: Is this Mr. Lilly?

Me: It is.

Receptionist-type Person: I spoke to your wife earlier, I have some information regarding the Tumor Review Board.

Me: Oh, great, we were hoping to hear back.

Receptionist-type Person: Dr. Bingaman basically recommends serial MRI at this point.

Me: What does that mean exactly, you mean fairly frequent MRI's, keep an eye on it kind of thing?

Receptionist-type Person: Yes.

Me: But when do we start that?

Receptionist-type Person: That would be determined when you meet with Dr. Bingaman and Dr. Tekautz, a Neuro-Oncologist.

Me: But when does that happen?

Receptionist-type Person: We'll be coordinating with Dr. Takautz office to try to figure out a time that falls in that window of follow-up so when you come up here you can see both Doctors on the same day.

Me: Oh...OK, so you are going to be contacting us with this date, we do not need to call you back to follow-up?

Receptionist-type Person: No, we'll call you when we get the details worked out.

Me: OK. Did they mention anything about chemotherapy?

Receptionist-type Person: I don't know anything about that, sorry.

Me: OK, thanks, I'll let my wife know you called and let us know when the appointment will be.

And that was that.

Essentially? It's the Do Nothing/Wait and See Plan for now. Joy. I love those kinds of plans. It makes each and every day such a wonderful, happy experience.

I'm just a little irritated that I didn't get this news from anybody who would be considered an expert, even an NP, a doctor or something like that, someone to whom I could direct some fucking questions.

I understand why...they probably don't KNOW anything yet and they likely WILL be scheduling that MRI for 3 months from surgery or SOMETHING like that, and from what Jen researched these kinds of tumors MAYBE don't respond well to the kind of chemo a kid can take we THINK though we aren't SURE but I should not be sitting here at my fucking computer GUESSING at what MIGHT be the reasons of what MAY or MAY NOT be happening MAYBE sort of SOMETIME down the line.

It just sucks to have to be in a position of waiting a few weeks to get in front of anyone who actually DOES know something.

That's fucked up.

Anyway, that's the news, for what it's worth. Which isn't much. Hope you enjoy the pics of a stitch-free Bennett.



  1. That damn picture of a signpost to something that may resemble a carrot is back...

    Sorry Ken. Sorry, sorry, sorry. I know you deserve better. Anytime anything at our hospital disappoints me I tell our neurologist because she is very quick to tell people what the impact of their words or action/ inaction is. Can you talk to Dr. L?

  2. Hurry up and wait...That really sucks BIG time....I hate that you don't have more of a "plan" at this point....I'm glad they are being thoughtful enough to coordinate the visits, but it seems you could speak PERSONALLY to one of the docs re: all of this BEFORE the appts.....

    News like this deserves a phone call from the "big guy"....

    Stay strong...


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  4. Well,for what it's worth,if it were me,I would SO be calling back.Demanding to speak to someone other then a "receptionist-type person" ... but then again that's me and having had way too much experience with these "receptionist-type people" ... it just doesn't fly.I am certainly not trying to ignite more fires but we just are not talking about some minor issue.Just my opinion.Lord knows I have enough of them.

  5. I'm with Heather. I think you need a chat with someone who went to school for something medical to get the real scoop.

    I know it sounds weird, but it might be a question of whose responsibility you guys are. I know that is no excuse, but that may be why the information was relayed by a "receptionist type."

    In our clinic, your doctor is assigned to you based on who is on call at "intake," when someone is diagnosed. Sometimes, if you are more of a referral, where you are becoming an oncology patient via a Neurologist, it might take longer because your Neuro may have specifically requested that a certain person be your new doc. But if that person isn't working that week, it could take longer. That is certainly no excuse, and isn't really an argument a family receiving a new diagnosis should ever have to worry about. But it happens.

    Hoping someone with some medical background is in touch soon.

  6. Look, if I thought calling someone guns ablazing because I think it would make a difference, I wouldn't hesitate to do it.

    But my understanding of things, historically, is that I get further in life with honey rather than bullets. I hold the bullets back as a last resort, but I like to use honey as much as I can.

    It works for me. Most of the time.

    I agree with Liz, there is some shuffling going around right now. Are we an Epilepsy patient, a Neuro-Surgery patient or a Neuro-Oncology patient? I'm sure that is causing some severe confusion.

    I do plan to call Dr. Lachhwani just to see what he thinks. I haven't spoken to him since BEFORE the surgery and it wouldn't hurt to try and ask him for some help.

    Also, historically. they have done right by Bennett. They've earned a little leeway from me to get their ducks in a row.

    If he were in imminent danger, I do believe we would have been speaking to someone else.

    Note to self:
    Blog after you cool off...not ten seconds after the call. :)

  7. Sorry.I am a react first think later and have been burned and forced to eat crow,numerous times, because of it.Your mode is a much more desired method and I'm thinking I should perhaps stock up on some honey in my house.

  8. It's cool. Partially I blame myself for writing while I was hot. I should have let myself cool a bit first and THEN explained it. :)

  9. Lilly you have to let out your frustrations when these things happen. Better here than at home...

    I take out my frustrations on underpaid call center employees. I'm not proud of myself.

  10. Ken...

    Just an idea...and perhaps totally not in your scheme of "want to dos". But maybe a follow-up email to Chugani? Let him know how things turned out with surgery yada yada...and if he has any recommendations on how to follow up? Perhaps he's had a patient before with a similiar pathology report? I know it's doubtful...buuut...the good thing with Chewie is that he responds ASAP. I know you're not a behind the back kinda this might not be your style.

    I'm just thinking if you feel like you're not getting anywhere there?

    Also...agreed on the honey method. Do you have any of these guys email addys? They all have them you know. I found my neuro's online...and just started emailing her w/o permission ;). It's been SUCH a great comfort knowing that if it's something that doesn't need to be answered RIGHT THIS MINUTE...I can email. And she's been very good at getting back to me.

    At the very least...I think you should go into your next appointment with suggestions of things that would really help you guys navigate this. Like...who do you call? What should your expectations be for call backs? Sometimes it's a simple one hand doesn't know what the other's doing kinda game. And being up front (which I KNOW you are) helps give clarity. And if there is ONE single thing you deserve right's clarity in communication on this!

    Anyway...just ideas, hon.

    ((((((the Italian in me wishes I could really squeeze you guys))))


  11. @ Sinead...I used to be one a those underpaid employees! ;)


  12. My idea was similar to Danielle's. I was going to say use your pediatrician to help get past the receptionist.

    I suppose wait and se eis good? maybe they feel they really got everything and there is no need to rush? Try to think positive.

    Love the stitch free Bennett.

  13. Ken please, no need to apologize, you wrote it when you felt you needed to write it.

    I feel like swearing to make this argument stronger, but everyone is so polite on their comments I don't want to upset the curve. lol

    You are right, you attract more flies with honey than you do with vinegar.

    But didn't you like the end of the 70s and the beginning on the 80s? At that time there were a lot of brain damaging drugs being taken.

    So, my plan, call them back play dumb, say you were an emotional wreck or something and that you're mind wasn't 100%, and that you didn't really understood what was being told to you, and that you'd like to talk to someone that can give you a little more information.

    This way it doesn't look like you're doubting, or assigning blame, or pissed off at anyone, "it's just this damned head of mine", and they might give you some more information.

    Also @Heather and Liz: You ladies only did what Ken did himself, you reacted while the iron what hot, but sometimes that's not the best time to strike, you need to let it cool down a bit and strike later. After you made your comments I'm sure you'd think twice and react differently.

    @Danielle: What kind of mix are you? And is your Italian side the one that likes to hug people? Being from a Latin culture (I'm Portuguese), we south Europeans are all big on hugs.

    And hugs are great tools, so to everyone here, if you have a kid with IS, or if you have one of those stranger "normal" kids, hug them, hug them long, hug them hard (sometimes the little suckers fight the hugs), but we all know they like them.

  14. Waiting sucks, and you seem to have much more patience that me!~

    I can understand your frustration, I can't imagine why a doctor wouldn't call you instead of you talking to a receptionist...that completely blows and I would most surely tell someone that.

    Why can't people understand that you need answers or at least someone who knows something to talk about it with!

    Hang tight! We're thinking of you in Michigan!

  15. That is just so messed up that some sort of medical professional couldn't call & go over this with you, that they push it off on some receptionist. Although she does sound like she kinda sorta knew what she was talking about?? I still think that kind of news should be delivered by a Dr., especially since the bomb had just been dropped on you last week. SO frustrating!!! Atleast I got to see that little cutie pies face & THAT made me smile!!

  16. Three thoughts:
    1. Bennett is precious.

    2. You have a right to any and all reports regarding your child's treatment. Call medical records and ask if the report has been filed yet--if so, get a copy. I do that when I need to.

    3. Doctors are playing the same damn game you are--nothing is for sure, it's always a judgement call. If it were me (and it isn't), I'd research that bad boy so much that they're asking you what you want to do by the time you have your follow up. Our neurologist ALWAYS asks me my opinion when we discuss treatment options because she knows I've done the research and have an opinion. Only way to fly as far as I'm concerned.

  17. Bennett looks so good! YES I am reading I am just shotty with comments...:(
    YES no Hyps is GOOD those are the Infantile Spasm EEG's...IS seems to have its own pattern on the EEG..strange..
    We are still dealing with Myoclonic jerks...annoying seizure jerks that we cant seem to get a grip on.
    I know the waiting game all too well..these damn phone tags that you play with nurses who talk to doctors then talk to you...then you see the real doctor in person every few sucks.
    hang in there! Bennett looks GREAT! I hope his mood is improving!

  18. Hi, I'm new to your blog but also have a son with epilepsy being seen at Cleveland Clinic. A week or so ago they told us they would not consider our son for surgery right now, but possibly in the future, because his seizures are too far apart. We are now looking for a second opinion on the surgery thing, but definitely don't want to burn the bridge of the great doctors at Cleveland Clinic. I have felt our son has received great care there and we know SO much more now then before we went there about his epilepsy. We were there for a week in November for vEEG etc. and I felt the nurses were wonderful and totally accommodating throughout our whole stay. One complaint I do have though is that even though we are 4 hours away, we can't actually talk to the doctor unless we make an appointment and go there, yes drive 4 hours. My son's doctor is not the same one as yours. So, I do think they are not the best on the communication side, even though their skills and expertise are world renowned. I agree with the person who said you are in the transition stage between doctors and will hear something soon. I also agree that it could not hurt to call and act dumb like one person suggested. They really are such experts there.

  19. Hi Sarah, I still believe there is no better place for my boy than CC. I would highly recommend it to anybody. I was just blowing off steam but I get how things work and how we'll get as many answers as we need eventually.

    It's just fear. And fear leads to anger, anger to leads to hate and THAT leads to the dark side... :)

    But I love CC. I really do.


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